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National Advocate Advisory Council

Established February 2012

We are proud to announce the expansion of our advocacy platform by establishing the Lung Cancer Alliance National Advocate Advisory Council in 2012. The Council will be an assembly of “lead leaders”, advocates recognized for their long term commitment to this organization and the lung cancer movement, for their outstanding work within the lung cancer community and for their unwavering support of our goal of reducing lung cancer’s mortality by 50% by 2020.

Members

Nancy Alvey

Nancy Alvey

I am a native of Madison WI, having moved to the Louisville KY area in 1981 from Chicago, Illinois.

In November of 2005, I was diagnosed with stage II lung cancer in the upper right lobe. Surgery was performed in December 2005 to remove the upper right lobe and various lymph nodes.  Four rounds of chemo, many x-rays, CT scans and doctor visits later, I have remained cancer free six years later.

When a Lung Cancer Alliance chapter was being formed in Kentucky/Southern Indiana back in May of 2009, I joined in as a Co-Chair along with Colette McCoy and Dr. Goetz Kloecker.

My husband, Sam & I remain active in KY/SoIN and DC advocating for the Lung Cancer Mortality Reduction Act.  A piece of legislation aimed at getting more money thru government to work on research and finding a cure for lung cancer. Big strides are being made. I feel that  “cancer is cancer” and lung cancer deserves as much funding as many other cancers. With a restructure of Lung Cancer Alliance, I will now join a National Advocate Advisory Council of long term survivors.

   
Tonie Foster

Tonie Forster

Hello, my name is Tonie Forster. I was 38 years old at the time of my diagnosis of SCLC in 1992.  At the time I considered this to be my worst nightmare, come true.  You see I'd been a smoker and a nurse too. Always knowing the risks I was taking and fearing this eventual outcome.  Initially the price paid emotionally and physically was overwhelming for me and my family.  We all experienced complicated emotions such as anger, guilt and shame.  For me, guilt was the most powerful piece to this experience of suffering.

The word survivorship has special meaning for each of us contending with this diagnosis.  For me, survivorship opened the doors of change and the healing of myself, not just my lungs.  It allowed me to rekindle my lost spirituality, my compassion and empathy towards others. I relinquished an administrative role in nursing leadership and rejoined the ranks of clinical nursing where I could reclaim those skills in a meaningful way. 

I reclaimed past interests such as furthering my education.  I allowed myself finally, to be supported by those who loved me and those whom I loved.  In that way, the path to forgiveness opened for different situations and relationships.  I developed courage and learned how to let go.  Then I finally got it...nobody lives forever. Now is the time for all of it.

Throughout, whether I was going to die shortly or be around for a bit, my beautiful husband, parents, sister and friends supported me throughout the journey that I am still engaged in.  My husband tolerates with infinite patience still, my anxiety when I am up for a revisit to a follow up CT.  I recall too with great warmth and love, my Italian parents bringing lunch for me while I was sitting in five hour chemo runs, my sister joining for wig try-ons with my young nephew on her lap and my friends pulling me out of my bed to learn how to play Mah Jong.  My community all became survivors with me.  In the end survivorship is about healing within a community and the Lung Cancer Alliance allows for that to happen for all of us.  I am glad to be part of this process.

   
 Julia Gaynor

Julia Gaynor

My mother was only 58 when she was diagnosed with NSCLC (squamous cell) and passed away just three months later. I saw first-hand the relentlessness of this disease, the tragedy of the stigma – and learned about the disparities of research funding. Although I felt powerless against the disease, I also felt that I had to channel my grief into action.  

I knew had to do something to try and make a difference. In 2008, I joined forces with LCA to create Team Lung Love, the first-ever national endurance training program to solely benefit lung cancer. 

LCA was the first organization that helped us make sense of her illness, and because of their compassion and guidance during those difficult months, I stayed in touch with them after she passed away. I not only founded Team Lung Love, but I traveled to Washington, D.C. several times to meet with legislators and worked closely with our New England chapter to put on four Shine a Light on Lung Cancer Vigils.

Since my mother’s death five years ago, I’ve seen incredible strides in terms of awareness, screening and research funding and I know that much of that progress has been because of the work of LCA. I am proud to continue my work with this outstanding organization, now as a member of the National Advocate Advisory Council.

   
Phyllis Goldstein

Phyllis Goldstein (deceased)

I am one of the founders and Co-Director of Lung Cancer Alliance-New York. 

I grew up in Philadelphia where I had lived for 24 years less than five miles from oil refineries.  My father died of lung cancer when I was 18.  I had to take on the responsibility of supporting both my mother and myself.  I was grateful for having taken stenography and typing in high school as those skills kept me employed while I attended Temple University evening college for six years to work on my bachelor’s degree which I completed at the University of Michigan and earned by Master’s of Social Welfare degree at University at Albany.  I worked for the Albany County Department of Mental Health for twenty years where I monitored and evaluated programs for people with a serious mental illness.

In 2002 my best friend, Susan, broke her arm.  When an x-ray was taken in the emergency room, it showed a shadow on her lung.  She was diagnosed with Stage 4 lung cancer and died within two years.  Six months later I had an occasional cough after recovering from a cold.  After much nagging from my husband I went to the doctor and was diagnosed with Stage 3A lung cancer.  My upper right lobe was removed.  This was followed by chemotherapy and radiation near my mediastinum.  As a consequence of the radiation, I later had dual by-pass surgery. 

My father, Susan and I were never smokers.  A lung cancer diagnosis was shocking to us all.  Susan and I walked together, early every morning before work, for over thirty years and talked about everything.  Ironically, she was my best support.  She gave me inspiration and hope.  I feel I owe it to my dad, Susan and myself to provide hope to others.  That is why I am working with the Lung Cancer Alliance.

   
Richard Heimler

Richard Heimler

I am a former non-profit executive and father of two, a five time and eight year lung cancer survivor of lung cancer. I was diagnosed with non-small cell lung cancer (NSCLC) at the age of 44.

I had pneumonectomy surgery of my right lung in 2004.  Two years later, I was diagnosed with a small malignant brain tumor. It was successful removed surgically. This was followed with six months of chemotherapy. A year later, I was diagnosed with a small malignant tumor in my right thoracic area under my ribs and it was successfully removed.  A year later, I was diagnosed with another small brain tumor (same region of the brain) and had gamma knife radiation to successful destroy the tumor. A year later, I was diagnosed with multiple small tumors on my left lung and immediately began chemotherapy.

When my cancer progressed to stage 4, my health care team informed me of a new therapeutic target in cancer called ALK, that is present in about 3-5% of NSCLC tumors. I had my tissue tested for ALK soon after, and the results came back positive. I then enrolled in a phase 2 Pfizer clinical trial of Xalkori, a first-in-class compound that inhibits ALK, blocking signaling in a number of cell pathways that may be critical for the growth and survival of tumor cells.

My doctors now cannot see the tumors on his CT scans, my pulmonary function is the best in years and my doctors are using the word “remission” for the first time in three years. I feel healthier, am more energetic and am thankful to be able to spend more time with my friends and family.

I have also been an active member of the Lung Cancer Alliance community, providing other newly diagnosed lung cancer patients with inspiration and advice. I believe one of my responsibilities as a survivor is to be a voice for the 1.4 million people that have died of lung cancer since I was diagnosed in April 2004.  I am proud to be an advocate for lung cancer and raise awareness of lung cancer with the media, politicians and the general public.

I have faith that someday someone will find something that will put a stop to the unbelievable number of lung cancer deaths each year so that my fellow lung cancer survivors and I may look forward to celebrating many more birthdays.
   
Kathleen Houlihan

Kathleen Houlihan

Originally from Texas, I spent twenty years teaching linguistics at the University of Minnesota before moving to New Mexico in 1991 with my husband Jonathan Holt Truex.  I had quit smoking shortly before the move.  In July of 1998, I developed a pain under my left shoulder blade.  My doctor and I agreed it was a pulled muscle from pruning overhead tree branches.  When the pain didn’t go away, I resisted advice to get an X-ray. 

Why should I get an X-ray for a muscle problem?  I finally had the X-ray seven months later, when I started coughing up blood.  I had an inoperable 7 x 8 cm tumor at the top of my left lung, adenocarcinoma, Stage IIIB. 

I thought I was dead.  But by the grace of God, I had a complete recovery.  My treatment consisted of chemo and radiation, along with a healthy diet, nutritional supplements, exercise, lots of prayer, and lots of love and support from Holt and family and friends.  Thirteen months after my diagnosis, the tumor had shrunk away to a scar. 

To celebrate the recovery of my health, I began taking singing and watercolor classes, and I became more active in my church.   Holt and I came to appreciate each other even more and continued walking dogs and going on hiking trips in Utah as often as we could get away.  My life was much richer than it had been before my cancer diagnosis.

Then in the summer of 2009, during the course of an annual cancer check up, I was found to have a new 1.6 cm lung nodule in my lower right lung, also adenocarcinoma, also inoperable (due to location), Stage IA.  It was considered to be a new primary lung cancer (because it was ten years after the first one and in the opposite lung), and that allowed me to be treated with curative intent.

I had much the same treatment as I had the first time, and by the grace of God I had another complete recovery.  My life is just about as full and active as before.  Holt and I are still walking dogs and hiking in Utah, and I am continuing the volunteer work I do with cancer patients through four different organizations, including the Lung Cancer Alliance.
   
Cecilia Izzo

Cecilia Izzo

I am an eight year (and counting) lung cancer survivor. As a volunteer for Lung Cancer Alliance, I am a regular visitor to both the state capitol in Olympia and that "other" Washington, meeting with local and national leaders to advocate for lung cancer awareness and garner support for the Lung Cancer Mortality Reduction Act.  In 2010 and 2011, I successfully organized and coordinated the first Shine a Light on Lung Cancer vigils in Washington State, and in 2006 was instrumental in getting Washington’s Initiative 901 -- the statewide ban on smoking in public establishments -- on the ballot, where it passed by overwhelming majority.

Despite three major surgeries -- including a pnuemonectomy in 2004 -- I enjoy an active lifestyle.  In addition to regularly walking and biking, I’ve participated in numerous half-marathons, hiked through the Costa Rican jungle, snorkeled the Great Barrier Reef, camped on Mt. Rainier, rowed for a dragon boating team, and -- while undergoing chemotherapy -- traveled to England to see my favorite musical artist Van Morrison in concert.

I hold a BSN from Columbia University, an MSEd in Exercise Physiology from Queens College, and am a Certified Diabetes Educator.  I currently work in the Pediatric Endocrine Department at Seattle Children's Hospital.  Born in Kansas City, Missouri, I’ve lived in Colorado, Kansas, New York, New Jersey, and Boston, but consider Seattle, where I have resided for 14 years, my true home.  I share my life with my two precious daughters -- Rachel, soon to graduate Seattle University, and Natalie, a freshman at Macalester College in St. Paul -- and my husband of 25 years, Jeffrey, an Assistant Professor at the University of Memphis.

   
Diane Legg

Diane Legg

I am from Amesbury, MA, married and the mother of three boys ages 15, 13, and 8. 

In the spring of 2004, a family friend, Susan Levinksy, a non-smoker, 43 years old and mother of 3, was diagnosed with stage IIIB lung cancer.  I was shocked and thought it was a fluke as I had never heard of a nonsmoker getting lung cancer. I was completely ignorant to how prevalent this disease was and how dismal the survival rates were. So in October of the same year, at the age of 42, I was taken aback when I too was diagnosed with lung cancer, Stage I, non-small cell lung cancer. 

We found my lung cancer purely by chance when I pulled a back muscle picking up my thenone year old son and a CT scan was ordered to rule out a pulmonary embolism.  An active, otherwise healthy mother of three, I had never considered myself at risk for lung cancer. I had a lobectomy, where my upper lobe of my left lung was removed, followed by 3 months of adjuvant chemo. In 2006, my lung cancer reoccurred and is now in both of my lungs.  Although I am stage IV, I consider myself incredibly blessed.

In January 2005, while I was going through my second round of chemo, Susan died. It was a mere nine months after she was diagnosed.  I was devastated.  Having learned much more about the disease and its impact during my treatment and recovery, I was determined to be the voice for Susan and for others that had succumbed to this disease.  I was determined to educate others and raise awareness of the disease.

Lung Cancer Alliance’s mission resonated with me; patient support, awareness & changing health care policy.  I became Co-Chair of the Massachusetts Chapter of Lung Cancer Alliance, which has recently become the New England Chapter.  In 2006, I started Shine a Light on Lung Cancer Vigil in Boston to honor and remember those who have been touched by the disease and to raise awareness.  Last year there were 83 vigils in 33 states and in two countries to Shine a Light on Lung Cancer and bring it out of the shadows.

Lung cancer can be a very lonely disease due to the stigma it carries.  After being diagnosed with lung cancer and learning the statistics, I was stunned by the lack of research that had been done, the lack of progress relative to screening and survival rates, and the lack of understanding by the general public, medical community, and government about the disease itself.  I am committed to speaking out about the devastation that lung cancer is having on our families today and to raising awareness in order to change the face of this disease. 

   
Ed Levitt

Ed Levitt

I was born in England, immigrated to Canada at age twelve and became an American citizen at age 36. My working career included two fortune fifteen companies where I spent almost 30 years in international merchandising/marketing and as a business motivational speaker.

I retired in 2004 after my diagnosis of stage 4 non-small cell lung cancer. I was given a few weeks to live and was told to get my affairs in order and make my final arrangements. After three rounds of chemotherapy that failed to control my cancer I was put on a biologic drug just fast tracked by the FDA and given radiation.

To my oncologists surprise the drug worked and within a matter of weeks my lung cancer all but disappeared. I am still being successfully treated with the same drug today, eight years later. I have had a few small recurrences which have been treated with surgery or radiation. Four years after my lung cancer diagnosis I was diagnosed with stage III bladder cancer which was successfully treated with surgery and chemotherapy. I continue to live a normal life by positive thinking and keeping busy with things that matter.

In 2005 I started a lung cancer group in Georgia with my wife Linda, to make a difference for those diagnosed with lung cancer. Lung cancer is so ignored and stigmatized. In order to make a real difference our lung cancer group needed to be part of a national group so we joined LCA and became a Chapter. I chose LCA because their mission to get federal research funding directed to lung cancer commensurate to its public health impact and to address it with a comprehensive program addressing all aspects of the disease is also my goal.

 What keeps me going?  Tenacity, attitude, fighting to make a difference for lung cancer, learning all I can about my disease, not sitting at home feeling sorry for myself. My story has been featured in three books, one in Australia. I have had stories in many magazines and newspapers and have been interviewed on television and radio.

   
Gail Matthews

Gail Matthews

In October 2000, we were in Aspen, Colorado visiting friends. From there, we flew to the Cooper Clinic in Dallas for an EBT heart scan. I did not want the test as it was uncovered by our health insurance however my husband signed me up anyway.  The radiologist read our scans. Our arteries were clear! However, they saw a spot on my right lung. 

The radiologist suggested I return home immediately and see a doctor. He thought it could be an infection, something else or lung cancer.  I was aghast. As a never smoker with little exposure to secondhand smoke and absolutely no symptoms, lung cancer was not something I could get.  How wrong I was. 

After the blood tests and a needle biopsy came back negative, I went for a second and third opinion because the CT PET scans still showed something on my lung. I opted for exploratory surgery. In early December 2000, Dr. Christina Williamson at the Lahey Clinic removed my lower right lobe and some lymph nodes. I was diagnosed with Stage I brochioalveolar carcinoma. After surgery, I was deemed cancer free with no need for chemo or radiation.

In 2002, a routine chest x-ray showed another spot on the left lung.  This time I was put through more tests which all came back negative except for the x-ray and the CT scan.  So after more opinions and more tests, an operation was scheduled for January 2003. Dr. Williamson removed my lower left lobe. It was the same cancer. Again I was cleared with no extra treatment. All that was required was a yearly CT scan.

I was back with my horses, riding a bike, living a normal life with the exception of being in crowds or flying for 6 years.  I felt blessed and once the pain from the ordeal subsided, decided to help the only national organization dealing with lung cancer at the time, Lung Cancer Alliance. I wanted to bring lung cancer out of the closet, especially the stigma.  In November of 2005, I announced we were throwing a Crystal Ball in Boston. We wanted to raise awareness in an elegant way while honoring the work of seven prominent doctors in the Boston area. We brought a lot of people together and I feel launched a movement in New England.

Fast forward to 2008, my healthy husband who exercises regularly, eats healthily and always used his brain was diagnosed with early onset Alzheimer’s. We are still able to maintain a quality life, however, the disease is progressive and I am now a full time caregiver with little time for anything else. 

And while lung cancer is horrible, from what I have seen with Alzheimer’s, watching a vital, brilliant and good person fade......it is really horrible.  At least if you get lung cancer early, you have a chance and that is why the Give A Scan program with LCA is vital to saving lives......just as the mammogram is for early detection of breast cancer.  We are grateful for all LCA does to fight this lethal cancer.   

   

Rich Monopoli

The day before the birth of our first baby, my wife Sara Thomas Monopoli was diagnosed with advanced staged, inoperable, lung cancer. She was 35 years old, never smoked, and was in otherwise perfect health. Our daughter Vivian was born on June 19, 2007 and the next day, we began our battle. Sara lost her fight with lung cancer. She passed away eight months later.

As a new parent and widower I was angry and scared. How could this happen to a young, never-smoker? Why were there no symptoms? I scoured the internet and only LCA provided answers. I joined forces with Diane Legg in 2008 and continued in the battle that took Sara’s life. 

Diane and our New England committee leveraged resources available to us to elevate Diane’s Shine a Light vigil to an annual flagship event in Boston and help to export Shine a Light to the world. The most empowering work for me is the political advocacy. Through the years I’ve met with legislators on the State and Federal level to advocate for an early screening protocol, general awareness, and additional research dollars. It is truly empowering to engage in this in this LCA community of advocates and survivors. It has helped me heal and I’m so proud of all that we have accomplished.

   
Mike Stevens

Mike Stevens (deceased)

I was diagnosed with stage IV lung cancer in June 2005. Learning of the extremely low funding levels for lung cancer and the unchanged survival rate over decades prompted me to get involved. After researching lung cancer organizations, I chose to volunteer with Lung Cancer Alliance. I have served as the Co-Director of the California chapter and remain heavily involved in the Annual Breath of Hope walk. The first ever advocacy work I did was at the first UCSD Lung Cancer Symposium.

I have spent time in both Sacramento and Washington DC meeting with legislators to support and pass lung cancer funding bills. I am also an “official” Phone Buddy for those newly diagnosed with the disease but I admit that I have been an unofficial phone buddy for over 100 different people. All of this work led me to receive a Hero’s Award in San Diego.

Living in San Diego, I graduated from UC San Diego in 1983 with a BA in Communications and Visual Arts. I ran my own business, a One Hour Photo and a Copy Shop, and became a recognized leader in his industry bring these two types of businesses together. I also started the 2nd all digital photo lab in the country. I do my best to bring my business, graphic arts and people skills to the work I do for Lung Cancer Alliance.

Working with few other survivors, my wife and I founded the San Diego Breath of Hope Lung Cancer Walk where in the first four years, we have raised almost half a million dollars for lung cancer. I continue to work on Breath of Hope, travel to support groups, participate as a speaker at lung cancer and other events and provide commentary via television, radio and print interviews.

I live with my wife, Susan, and enjoy spending my free time working in the mountains clearing brush, cutting firewood, gardening, hunting and fishing.

 

   
Randy Urmstrom

Randy Urmston

I have practiced law in Seattle as of Counsel to Hendricks & Lewis since 1990 and previously worked in legal and engineering positions in the energy, environmental and waste management sectors.

I connected with Lung Cancer Alliance (“LCA”) through its predecessor Alliance for Lung Cancer Advocacy Support and Education (“ALCASE”) in 1997 when I was diagnosed with stage IV lung cancer.  Through ALCASE, I learned more about lung cancer, gained support from others and participated in medical conferences.  Peggy McCarthy, ALCASE founder, was a driving force.  Through Peggy’s vision and that of  Sheila Ross and the leadership of  Laurie Fenton Ambrose and current staff, ALCASE, now LCA, makes a real difference in the prospects for lung cancer patients.  I was President of the ALCASE board during a fragile, but important transition from the West to the East Coast. In recent years I have welcomed the opportunity to be a phone buddy with patients, who are where I was not too long ago.

My children, who in 1997 were amused by my bald head, are now in college.  And my wife Eliza Davidson, who was also an effective advocate in the medical world, is an architect, landscape designer, arborist and on the board of the National Association of Olmsted Parks.

I spend any extra time on Israel/Palestine issues through St. Mark’s Cathedral in Seattle.  Like many others I fell in love with the Northwest when temporarily stationed at Fort Lewis in 1970 and subsequently moved permanently to Seattle from Delaware, having graduated from V.M.I.  and U. VA Law in 66 and 69, respectively.